[Christina86]

I don't like the stupid "mandatory" medical appointments to check on my health and wellbeing when I KNOW when something is wrong versus when something is NOT. I don't like wasting a doctors time when I KNOW I'm perfectly healthy (relatively speaking) by having a stupid appointment just because I'm supposed to have one every stinking year!

I liked my neurologist the best actually. I met him once. He said, "nice to meet you, and I hope I never have to see you again". I liked that. I only have to see HIM if I feel my neurological health is going wonky (like my shunt - I have hydrocephalus). At least that means I won't waste the man's time!

I have to see a urologist every year. TMI likely, but I'm prone to issues - including UTIs. So I went to my stupid yearly appointment last week. He says that he's sorry that he's seen me - because the ultrasound I was supposed to have before the appointment got rescheduled until JULY! So he might have to see me again anyways after that appointment then! Sigh. Not that he's not a nice man... but honestly. Half hour commute, for a 10 minute appointment? He also wrote me up a prescription that I didn't look at until I had left. BAD idea. He changed my meds without even telling me! In the grand scheme of things its not like its a traumatic change (like messing with an antidepressant) but still... grrr. Don't change my meds without telling me first! Gah. I'm too crabby to call him to scream at him though.

Oh, and I'm perfectly capable of managing my stupid urological health, thank you very much!! If I thought something was wrong, I go to the doctor.

I have no problems with doctors. I'm not scared of them. I just don't like wasting their time and my own for no good reason!

The most useless of the doctors though, HAS to be my "disability" one. She's a doctor for spinal cord injuries blah blah blah. Yeah, that one. Anyways, She asks me questions. That's it. No physical exam, nothing. Her appointments make me question whether I'm better having a doctor over the internet! Just as efficient.

Not that my disability is degenerative. It IS chronic (obviously), but unlike muscular dystrophy or cerebral palsy, spina bifida does not get progressively WORSE. It stays the same unless something weird happens ...

So I'm fortunate, yes?

Stupid doctors who know nothing... blargh. I swear my psychiatrist knows more about my disability and how it affects me (physiologically, emotionally, etc) than any other of my doctors. Why's that? Because he LISTENS. God forbid a doctor actually listen to their patient.

Oh, and this whole thing about being "positive" and changing how you feel about being disabled - feeling "fortunate" for not being more disabled than you actually are??

In my opinion, it's CRAP. Why? Because having a disability is no "walk in the park" (pun intended). It does make you feel like crap. Yes, you can have days where you feel happy to be alive and you feel fortunate that you condition isn't worse than it could be...

But if someone says that they're HAPPY to be disabled... I question their statement. Unless they're happier to be disabled than an alternative... like being dead, now that's a logical reason for being "happy" to be disabled.

Yes, it's great that I'm better off than other people who are disabled. But there are also others who are way better off than me. Am I going to compare?? Well, yes... sometimes I can't help it!

Don't ask me how I feel to not be able to walk. It's not like I've been able to walk without a walker/cane before sometime in my life... so it's not like I've lost something.

Can we mourn what we never had to begin with?

I think we can sometimes. Or at least my numerous therapists/psychiatrists/others have said to me. You should be able to mourn where you are in life. Just because you didn't get/have X,Y,Z doesn't mean you can't imagine having them! It doesn't make it hurt any less I think.

I know it hurts to be disabled sometimes. I also can see how horribly it can affect a family. I cannot deny that having a disabled sister has shaped my sisters differently (more negatively in some ways) than if I wasn't disabled. I also can't say that my parents didn't get stressed out and deal with a lot more with a disabled child.

But...

I sometimes feel I have no right to feel sad or crappy because I've got a disability. Because "someone else is worse off" because "your family suffered too" because "you should be happy to be alive" because "there are medical technologies which make your life better" because "you're pretty close to being normal" because "you can do all of these things that other people can't" because "you shouldn't focus on what you can't do" because "you are only as weak/disabled as you think/feel you are"... etc.

I could go on, but you get the point - yes?

I don't feel human sometimes. I'm caught up in this idea of "normalcy" and how I don't meet it. How I fail to be X,Y,Z ... and I HATE IT.

I have a disability.
I am sometimes "disabled".

But being "disabled" means that your environment impeeds your ability.

If I lived in a perfectly "accessible" world, I wouldn't be DISABLED. I'd have a disability, but I wouldn't have to worry about getting into a building, I wouldn't have to worry about getting medical attention, I wouldn't have to worry about getting around, I wouldn't have to worry about people's comments/stares/misconceptions!

Blargh. I have no idea where this rant came from.

I could say I was sorry, but I'm not really.

I am a human being first.

Disability second. Woman second. Caucasian second. Everything else is SECONDARY to the fact that I am a HUMAN BEING and I deserve the same respect/care/love/attention as everyone else.

I don't want more attention because I'm disabled. I don't want pity. I don't particularly care if you ask me if I need help - because I admit that I don't ask for help enough...

But honestly, I just want to be treated like a human being.

I also have found the best friends - by those who, when asked say that they didn't notice the wheelchair first - they noticed ME. ME!! I don't particularly like "me" always... but sometimes it's nice to be noticed!!

Now, if only I could get through to all of those insensitive idiots in the world who would rather hurt me, abuse me, or ignore me rather than to treat me like a human being.

One step at a time, eh?? (Pun intended again, lol)

(Oh, and the phrase "a walk in the park" is something I use often. To "walk" means to go someplace. I don't take it personally... I like "walk" over "wheel" any day! )

[Perna]

I don't think you have to have a reason to feel. You feel what you feel! If you feel crappy today, you don't have to have a reason, just have to see if you can help yourself feel less crappy :-)

I'm with you on the comparison thing and how that doesn't do any good, make one feel any better. The only things that make me feel better are my own ways and means that I personally like.

I'm sort of with you on the doctor visits; I have to go to the doctor every 3-4 months for just chronic stuff! But I don't feel bad for the doctor and like I'm wasting his time. He gets paid for it, that's one reason they make you come in. I use the time between appointments as a bracketed time period to see if I can get "better"/healthier in some way or another (lower my blood pressure or lose more weight, etc.). It kind of comforts me too to feel there's a bit of a safety net there, that this doctor is getting to know me (whether he wants to or not :-) I argue a lot because I had several doctors who almost killed me back 5-6 years ago and now I don't let "them" manage my health. My husband and I go together, to the same doctor and in the same appointment (so the doctor gets a 2-for-1 billing deal, another reason I don't feel sorry for him).

I hear you with the prescription changing thing too. I changed pharmacies because they kept changing the labeling/packaging, etc. on me. But now I don't bother with the doctor much, if something changes I have a pharmacist I really like and I just talk with him, what it means/is.

[Miracle1986]

Christina

[January]

((((((((((((((( Chris )))))))))))))))

Being disabled stinks and you have every right to your feelings and thoughts.

This is alone "Oh, and this whole thing about being "positive" and changing how you feel about being disabled - feeling "fortunate" for not being more disabled than you actually are??" is enough to shoot my temper through the roof and right into orbit, so I understand.

I'm here if you need me.

Many hugs,

Jan

[sunflower55]

(((Christina)))

I hope this rant helped you get some of it out of your system.

It's ok to feel angry, exasperated, PO'd, or just generally fed up with it all once in a while. Just don't stay there too long, ok?

And remember, we're here for you when you need to let loose.

Peace!

[Christina86]

So...

Funny story!

Or maybe ironic.

My campus/university is hosting a bunch of conferences this summer, like we do every summer. We have the space, and it's a nice campus.

Well, today and tomorrow there's an annual DISABILITY conference/congress/thing!!

So... I got weaselled into volunteering because the volunteers all know me since they're all people from my university (fellow students, and those working in the disability centre). It was... interesting.

Stuff about "hegemonics" (sp?) and "narratives" and "phonology" and disability... basically it sounded like a bloody long research paper wayyyyyyyy over my head. oh, and that was just the ONE talk/discussion!

The other was on how to make people with disabilities more included in the post secondary classroom, dealing with learning strategies and how to make those in post secondary have more help and to feel less isolated... that discussion was more interesting than headachy since they used actual boring English. Oh, and it was cool - I met profs from universities who were completely blind (sight impaired)! I also talked to a woman who works for disability advocacy and who worked in a disability centre on a campus... and this sort of thing might actually be a viable job opportunity in the future, which is pretty awesome!

But it was kinda cool. And I'm glad I went. I also felt a bit more validated since we discussed how a woman with a disability isnt necessarily always seen as a "woman" or "female"... just as asexual. Sad, but true... Talked about advocacy and all that nice stuff too...

It continues until tomorrow (Tuesday) and I said I'd be in to volunteer again. Hey, they let me go to any of the speakers talks for free (would cost $25 for the two days!) and I get free food. Oh and a cool button. And all I have to do is talk to the people who attend and make sure nobody gets lost and answer random questions about the university!

I'm such a sucker for volunteering...

But thank you for listening and for understanding. I couldn't ask for much more than that...

<--- this is how I feel right now and it's very very nice.

I think this will be called "Christina's rant thread about disability" since this IS a common theme/discussion in my life. For obvious reasons, LOL!

[sunflower55]

Hey, glad you got something good out of it,
And it would be super cool if a job was the long term outcome from this experience!

Ironic, yes!
But, sometimes the Universe works in mysterious ways!

Peace!

[January]

Yay!!!!!!!!!!!!!!!

[Crew]

Hey

I also don't care for being disabled! My thoughts and prayers are sent your way. Just know were here if you ever need to talk...ThaCrew

[nightbird]

((((Christina))))

xoxoxoxo

[Christina86]

Another rant:

People who sell me wheelchairs that break on a whim need to have their butts kicked...

My NEW WHEELCHAIR which broke:

First one week AFTER I GOT IT, the piece of the chair that holds the front wheel on BENT and the wheel FELL OFF. Apparently it's made of ALUMINIUM!!! (And the rest of the chair is titanium alloy, honestly... how hard is it to make a quality product??) Anyways, so they fixed that... and it took forever to arrange a time for them to drop it off.

I've had it again for maybe 2-3 more weeks and ITS BROKEN AGAIN. This time the front screw on the SAME WHEEL AS BEFORE has magically fallen off and disappeared and I'm terrified that the wheelchair would fall apart with me in it, so I'm using my old chair (which I got completely repaired... and it cost me over $120!)

So of course that means that next week I'll be calling them back to come pick it up and fix it AGAIN. At least I don't pay for it since it's covered under insurance/disability/social assistance.

Blargh.

In another unrelated rant...

I've got an appointment with my idiotic "spine" doctor... whatever the official title is for the person who knows about spine issues and neurological disabilities??

Yeah that woman. I see her once a year, and it's come up again to see her again. Which means 30+ minutes on a bus, 20+ minutes waiting once I get there... and a TEN FREAKING MINUTE APPOINTMENT.

Where she won't examine my back, she'll ask me random questions that she could ask over the freaking phone.

:headdesk:

[(JD)]

[sabby]

Holy Moley......You're disabled??????????????????????????????

I never would have known if ya didn't mention it for crying out loud

I'm sorry that the insensitive clods in this world make you feel like crappola. Working with folks who are developmentally disabled, I try so hard to elevate the positive when in the community.....I ALWAYS smile at people who are staring..it makes them feel like they've been caught teehee. I ALWAYS show the community how much I enjoy being with the individual that I am supporting...we laugh, we joke, we lean on each other and sing sometimes....it's a blast!

So ((((((((((((( Christina )))))))))))))))))))) my friend, give 'em all the Bronx cheer p~~~~~~~~~~~~~~~~~~ then smile and go along your way. Those who know you and accept you for the human bean that you are, are the ones blessed with your presence, your friendship and your love.

xoxoxo
sabby

[Christina86]

Update: The "spine" or "disability doc" actually sees there's no reason to see me every 12 months, WOOHOOOOOOOOOOOO!!! So it was still a useless appt, but now I only need to see her every 18 months instead.

Another rant.

I've got my yearly ultrasound tomorrow morning. No eating all morning, BOO!! Dumb but nice urologist thinks these are "mandatory" ... *I* think they're a waste of my time and everyone's money and energy!

At least I don't have to see him for another year if I don't hear back from him... he's not rebooking another appt unless my test results are bad.

As far as I know, my kidneys are still there, as well as my bladder and all other lower organs, girly parts included...

And I'm not in pain... and no physiological indications of anything wrong...

Blah. WHAT A WASTE OF TIME.